A MUM-OF-FIVE is hoping to raise awareness of the rare disease her daughter is suffering from by holding a four-day conference in Birmingham.

Michelle Peel, 37, of Chelmsley Wood, was told by medics Evie-Anne, then only nine months old, had the little-known 1p36 Deletion Syndrome. There are only 35 other recorded sufferers in the UK and Ireland, and 400 world-wide.

Michelle is hoping the conference, which will be attended by many of the affected British families, will raise the profile of the disorder.

Evie-Anne, aged two, has a catalogue of symptoms, including blindness, epilepsy, sleep apnea and the inability to eat. She is also unable to speak.

It is a genetic disorder. Those with the syndrome have lost a small but variable amount of genetic material from one of their 46 chromosomes.

Full-time mum Michelle and husband Mark, 36, a tree surgeon, first noticed there was something wrong with their daughter when she was five weeks old.

“Evie-Anne lost weight as she was not eating or drinking,” Michelle explained. “Her head was still floppy and she wasn’t looking at us. Then she suffered a fit. I went to the hospital and they couldn’t figure out what was wrong with her.”

However, Michelle was determined to find out why her daughter was not developing properly and scoured the internet to find an answer.

She added: “I thought it was a genetic condition and pushed this further with the hospital. Eventually Evie-Anne saw specialists at Birmingham Children’s Hospital and they discovered she had 1p36.

“There is so little known about the syndrome that there could be other sufferers out there.

“There’s a conference in America every year but that’s difficult to get to for families so I decided to do something in Birmingham this year.”

Michelle has a programme of events lined up for the conference, starting today, Thursday.

They include an information day at Merstone Specialist School, in Smithswood, an outing to Drayton Manor and a children’s party.

“It gives us all the chance to meet up and share our experiences,” Michelle added.

“We can also speak of the different symptoms the children are suffering. We are trying to start up a charity but this costs money and because people have never heard of the disorder it makes it very difficult to raise funds.

“If there is anyone out there who has children diagnosed with the condition, they are urged to come along or get in contact with me.”